Look, I get it. You see someone hurting and you want to help them. Maybe you were sick once but because you tried x-supplement or y-exercise you now feel better, and that’s great. I’m happy for you, really, I am. And I appreciate the sentiment of wanting to help me to feel better, I understand that you genuinely are trying to help. That’s why I think it’s important for you to understand why it’s not helpful and actually ends up hurting me instead.
I can’t speak for all spoonies, of course, but I am very active in multiple support groups for chronic illnesses. The following list is not only made up of my own personal experiences and feelings, but it also includes common complaints I’ve heard from multiple people in these groups.
1. I Know My Illnesses Better Than Most Doctors
I’m sure this isn’t the case with all chronic illnesses, but I have some rare (or rarely understood/diagnosed) illnesses. I often find myself talking to a doctor or nurse having to explain to them how my illnesses work, what the symptoms are, what treatments are out there for it, etc. If I didn’t research my illnesses tirelessly, then I would be much worse off than I am now. In fact, I wouldn’t even have the diagnoses that I have if it wasn’t for me researching and pushing to be evaluated.
On TV shows like House, the doctors try tirelessly to find out what is wrong with their patient and get them the proper treatment. My illnesses were actually even talked about on House, but they still got it wrong. Most everyone I know with a rare chronic illness has done enough research to earn an honorary MD. Anytime there is even a hint of a treatment that helps, we are all over it like ants at a picnic, researching all possible effects and benefits.
The chances that you know more about the intricacies of my illnesses than me are incredibly slim, unless you actually have my illnesses. When you approach me with medical advice without ever trying to understand my illnesses, it feels like you are more interested in getting me to stop talking about my illnesses than you are in understanding my experience.
2. ‘Natural’ Doesn’t Necessarily Mean Effective
As I’ve mentioned in other posts, I’m all for all-natural whenever possible. I’m a huge advocate for federally legalized medical marijuana and cbd oil as it has the possibility to help a huge amount of people. I, personally, could get off of at least half of my medications if I was able to use medical marijuana. It has far less side effects than most of my medicines and has the benefit of being all-natural. Honestly, I don’t understand how this is even still a debate.
However, that doesn’t mean that every treatment labeled ‘all-natural’ is beneficial. Not only is every illness different, but every patient is different as well. Caffeine in espresso beans is all natural, but it still gives me horrible tachycardia. There are many things that will cause us a lot more harm if we try it. So, we research (see above), or wait until scientists have been able to research the effects of a treatment on patients like us. Remember, just because something is natural doesn’t mean it’s safe either. Many natural things are poisonous or toxic. We can’t just go running into the woods eating every berry, mushroom, and herb we come in contact with if we want to survive to leave the woods.
I know the popular belief is that traditional doctors want us to stay sick because they benefit off of us being ill, but practitioners of holistic medicine also benefit off of us being sick and needing repeated treatment. Correct me if I’m wrong, but it’s typically not free to go to any kind of holistic practice and they typically don’t take insurance either, so it’s all out-of-pocket. Snake oil salesmen exist in all types of medicine.
3. We Have to Fight For Treatment
There seems to be a misconception out there that traditional medical doctors work like WebMD, you go in with the sniffles and you leave with three new illnesses and eight new prescriptions. People have this idea that doctors are over diagnosing and over-medicating. This has not been my experience, nor has it been the experience of most people I know with chronic illnesses.
I am 31, on my way to 32, and I just received a diagnosis for Ehlers Danlos Syndrome (EDS). EDS is a genetic disorder, meaning that I was born with it. My entire childhood, and the beginning of my adulthood, I was sick constantly, had frequent joint injuries without high impact risks, complained of all over body and joint pain, suffered migraines, and struggled with depression. I saw doctor after doctor that told me I was fine. They would humor me by running basic tests, but since my problems are more rare, the tests would all come back normal, only confirming their belief that I was fine and it was all in my head. They would tell me to diet, exercise, get out more, and send me on my way.
My story is not an unusual one in the chronic illness community. I have heard story after story of people who know that something is not right and push for doctors to listen to them and not underestimate their symptoms. If we actually have a diagnosis and a doctor willing to try treating our illnesses or symptoms, then we have fought long and hard to get there. You coming in and telling us that all doctors are quacks and pill-pushers so we should try your unproven treatment is diminishing to the years of anguish we went through just to get that diagnosis.
4. We Don’t Like Medicine…We NEED It
The general consensus among my fellow spoonies is that the majority of us hate being on a bunch of meds, spending a fortune at the pharmacy, and dealing with an array of side effects. We don’t take the medicine because we enjoy those things, we take it because we need it to be able to function. If a medicine is not helping us, generally that means we stop taking it. We tend to not just sit around throwing a bunch of useless meds down our gullets for the heck of it.
The judgement tends to get especially harsh when it comes to pain medicine. There are definitely people who abuse pain medicines, but more often than not they are buying those meds in the Wal-Mart parking lot or some shady location rather than actually receiving a legitimate prescription for them.
There are many patients out there that need access to pain medication regularly that are not using it to get high or to abuse it but are using it for an actual medical need, yet the stigma and war on pain medicine has made it far more difficult for us to have access to these medicines. This, to me at least, extends to the crusade against legalizing medical marijuana as it is an incredibly effective chronic pain medicine with far less side effects than narcotics and opioids.
I know I talk about medicine and the stigma towards those of us who rely on medicines a lot. Maybe that should indicate to you just how big of a deal this is to me. When a well-meaning person tells me about how all my medicines are basically poison peddled to me by greedy doctors to keep me sick and that I should just try yoga/oils/vitamins/juicing/fasting/whatever else instead, it hurts me. It fills me with guilt about the medicines I have to take. It even has gotten me to try to go without my medications, with disastrous results.
5. We Don’t Enjoy Being Ill
The worst effect of these type of “helpful” conversations is they typically end up with us feeling anxious, guilty, and angry; while the person giving the advice ends up feeling like we are stubborn and must enjoy being sick because we are unwilling to try your miracle cure. That may seem dramatic to you, but this has actually happened to me as well as many other spoonies. I have had someone tell me that I’m just too negative and not willing to get any better. This is perhaps the worst thing you can do to someone with chronic illnesses.
In case I haven’t made this clear enough in previous posts, IT IS NOT OUR FAULT THAT WE ARE SICK. It’s not because we have too much negative energy, or didn’t pray enough, or prayed to the wrong god, or any of the other various things that people claim have made us ill. When people imply, or even flat-out tell us, that the only reason we are still sick is because we aren’t trying hard enough, it crushes us. Hopefully, if you’ve been reading all the other reasons listed on this post, you now understand that we are trying harder than you could ever imagine.
We are fighting battles, even if you can’t see them, every single day.
We do not need someone with little to no understanding of our illnesses claiming that they know what will fix us. We do not need someone forcing us to justify our treatment plan. We do not need someone judging us for doing whatever is necessary for us to make it through the day. We do not need someone casting the blame of our illnesses on us. We do not need someone claiming that if we really wanted to be better, we would be, so we obviously are choosing to be sick.
If you want to help us, attempt to understand our illnesses. I light up whenever someone tells me that they researched my illnesses, not to preach to me, but to try to understand my journey.
Listen to what we tell you about how we’re feeling and what we’re going through. But, know that in order for us to tell you these things, we have to feel safe with you. If we feel that you are going to do any of the things listed above then we will attempt to hide those parts of ourselves from you.
Support us on our journey and trust that we are always fighting, every second of every day. Supporting us doesn’t mean trying to fix us. Unless we ask you for your advice on treatment, we aren’t looking for it. And if you haven’t taken the time to first understand my illnesses and/or listen to my experiences with my illnesses, then I definitely don’t want your advice on it.
If all else fails, ask the spoonie in your life what you can do to help support them. Chances are, they know exactly what they need from others and will be grateful that you care enough to ask to ask what we need rather than assuming what you think we need. Whatever you do, if you love a spoonie in your life, don’t give up on us because our journey doesn’t look the way you think it should.
Spoonies, I’d love to hear your thoughts! Leave me a comment sharing what you’d like to see people do instead of giving advice, or what you need from your supporters in your life.
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